Life with autism, breast cancer and other adventures

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Monthly Archives: May 2015

Summer is soon upon us, and while I’ve always had a healthy respect for the fantabulous educators that work with our offspring, let’s get real, I don’t celebrate summer break as much as they do. We may both be doing countdowns, but only one of us is doing this in celebratory spirit (hint – it’s not me).

It’s not that I don’t dig having the trio around more, doing things we don’t normally have the chance to do, and/or hanging out in our pj’s until mid-morning (who am I kidding – yoga pants work all day, right?) it’s more about organizing it all and making sure we have a workable plan in place for everyone.

It’s a delicate balance making sure everyone has enough to do – but not so much that things get crazy. Not to mention since I’m the one getting everyone everywhere, making sure I can actually accomplish that for each member of the trio without double booking myself on opposite ends of town and without adequate coffee – as that would be just plain ugly.

More importantly, each of our kiddos is very different, and has different needs/styles. Given the chance, Henry would not leave his room at all during the summer except to consume entire jars of peanut butter leaving dirty spoons in his path or to alert us with any internet connection issues. Ada needs a nice balance of hanging out at home and having free time with the neighborhood kids along with some learning activities (she’s the easy one in this department). Elliott needs to be on the go at all times, and his day needs to be highly organized, structured, and planned in advance. He needs lots of learning activities but with multiple errands/shopping trips/bike rides in between to break up his day. He does not do well “hanging-out” – there is no such thing for him. No, I’m not exaggerating – at all!

And so, I’ve been thinking about what’s going to work for each person, and what types of things we can try to tackle together as a group. Goals are good – don’t you think? If you don’t start the summer with any objective(s) in mind – things have the potential to get really ugly before the backpacks are even cleaned out!

Adding to my need to get summer plans in place is the realization that in the midst of doing everything we’ve done through the years to help the kiddos due to autism, we’ve done a crummy job of helping instill community spirit and especially for E, an understanding of any special needs besides autism. Man, this is not easy to own, and if it weren’t my own kid I would find a pinch of inappropriate humor in that the teenager with ASD lacks compassion for anyone with needs different than his own (and likely for those with similar needs as well to be fair). When one of the many embarrassing incidents involving E’s lack of understanding/compassion came up, Tom and I were equal parts horrified and sad and then realized that when the only people he is exposed to in his everyday life are other kiddos with ASD, well, guess what, he’s not very understanding and frankly, can be quite rude.

That’s when it hit me – the trio needs to spend some serious time sharing some of their talents (or developing some further talents if Minecraft is your sole gift) with others. I shared my vision with Tom, who was all over it, and then we shared with the children our exciting plan!

Epic. Fail. Crying, meltdowns about having to miss out on valuable Minecraft time in order to help out at a nursing home, wanting to know how much $ they would make for doing anything for anyone other than themselves, not necessarily embracing the idea of being of service to others.

Tom and I regrouped (and shared an IPA) as that had turned out much uglier than we anticipated! In truth, following that debacle, I fantasized that my Grandpa were still around so that the children might spend a nice long weekend with him for some “character building” fun. While it would be easy to fill a book (R rated, of course) with Grandpa-isms, I think his remarks from our days weeding the beanfields of southern Minnesota summarizes it adequately. When my sister and I fell behind one morning manhandling a nasty patch of cockleburs (yes that’s a real plant), he looked at my Dad and said “Tom, these girls aren’t going to amount to crap” – ok, he didn’t say crap, but you get the idea. More importantly, I was 8, and my sister was 6.

Then, in the midst of trying to figure out how to make this work, I took E & A to a local nursery to pick up a few plants a couple of weeks ago. As we stood in line for check-out, it became apparent that the elderly woman in front of us was struggling to carry all her items, so I volunteered E’s services. He immediately said something friendly like “I don’t want to help her” and then I gave him the evil mom stink eye, which still didn’t work, where upon I took the hanging basket, put it in his hand and said “go to her car now!”. The poor dear looked a bit shaken, so I briefly explained that I was working with my son who has autism to be more helpful to others, and frankly, she just looked like she wanted the blank out of that nursery and away from us NOW!

I was sad and depressed, and yes, I’ll admit I was not as calm as I could have been chatting with him on the ride home. Kind of ironic that I was yelling at my son to be more kind to others – don’t you think? Ugh.

Then it hit me. I need help teaching my offspring kindness, helpfulness and compassion because it’s going to take a LOT of practice. Heck, maybe I need a lesson or two myself! So, that is my new quest – I need to hire someone (or a large team) to help first E, and then the trio, learn to value and appreciate helping others. No big deal, right?

Here’s my vision – if I am able to sucker someone into this (yes, we’ll need to pay handsomely), their only mission will be going out into the community and finding ways to commit “Random Acts of Kindness” – you know, holding doors, carrying items, offering to plant a flower, wash a car or mow a yard, etc. I will likely set things up behind the scenes, of course, so if you have any tasks that you need help with or know someone who could use a helping hand with something for whatever reason, please give me a shout-out! They need to be able to handle a 14-year-old who will likely complain a lot initially, but with repeated practice and spreading good will, I’m sort of hoping he will develop some intrinsic sense of pride for helping others (hey – I can dream).

E’s the kind of guy that he just needs a lot more exposure and practice doing something than his typical peers, so if we spend our summer with this goal in mind, I’m hoping we might be able to do a bit of good in our little corner of the world, hopefully not alienating everyone in our path. One step at a time – but can you even imagine the interesting tales we’ll have to tell from the comfort of our red couch?

So, have we persuaded you yet? Know someone who wants to hang out with E and/or the trio spreading good will for a few hours a week? Come on, doesn’t this sound like awesome summer fun? If nothing else, Henry will ensure that there are a bevy of new Minecraft fans in the 90 and over age category. Win-win!

There is a glimmer of hope, after all. Last night, E noticed that our neighbors’ grass was getting a bit long. Instead of marching over to their home to share with them how awful their lawn looks (yes, this has happened – do you even have to ask?), he looked at me and said “I know they are moving next week, and are very busy. I’d like to help them mow their grass” and then just did it! Can’t say I didn’t tear up just a little . . .